My Story | Kath M., Australia

Vulva cancer, diagnosed 1994 at age 42
Wide excision, radical vulvectomy, simple vulvectomy; External radiation

(The following was taken from a speech Kath presented to an oncology nurses' workshop in Australia)

Can you imagine, for a moment, what it is like to have your clitoris, vulva and lymph glands - the most intimate parts of the female anatomy – removed from your body? And can you imagine what it is like to know that you are not only facing the possibility of your own death, but also, the certainty that your sex life will never be the same again? This happened to me and I would like to share with you my experience with vulva cancer (VC). I do so in the hope that women and men might become aware of the existence of this disease and its consequences. Moreover, it is my hope that women who suffer from this disease will have the knowledge, support, and comfort needed to cope with its aftermath.

My experience

Seven years ago, I consulted two general practitioners and two gynecologists because I had a lump on my vulva. I was told that thousands of women have lumps in this area - there was no cause for concern.

I was also told that a Pap smear test revealed I had a wart virus. Like most women, I was uninformed and naive. My understanding of a wart was a lump that comes and goes, usually found on the hand or knee. But what the doctors were talking about was the Human Papilloma Virus, commonly referred to as HPV.

What I did NOT know, (and was NOT told), was that the wart virus was a sexually transmitted disease with an 85% lifetime risk of exposure. I also was not told that it was found in 95% women with cervical cancer.

The diagnosis of vulva cancer left me feeling numb. I went into survival mode, just did what the doctors thought was best, and never questioned what was said or done. Following surgery, I was given a mirror so I could examine what had been done, and what I was left with. The horror and fear I felt was indescribable. I believed I was the only woman in the world who had VC. It was a nightmare that couldn't be happening to me. If only I could wake up and find that I was dreaming. But this was for real. The impact of radical surgery and radiation left me feeling isolated. I couldn't cope with the emotional issues that surfaced within me, and with my partner and family.

It was then that the fears, anxiety, frustration and anger began to show. I felt alienated. I had no one to share my experience with. No one could even begin to know what I was going through. How would I get through it all? There was much I needed to know and there was no one to ask. So I sought information from the local library, only to discover that the previous librarian had died of vulva cancer. WHAT A DISCOVERY!

The experiences of others

If the librarian had died of VC, and I had VC, then there had to be other women out there with it also. Thus began my search for information, and for other women with the same cancer.

In 1996, I placed an ad in Woman's Day Magazine in search of other Australian women with vulva cancer. Thirty women responded. I was no longer alone. At last I had found others. This was my turning point.

Many of the women spoke about feelings of alienation and isolation, of having to suffer in silence, afraid of what they didn't know, and lacking the courage to share their anguish.

One said:

I had a vulvectomy operation and my doctor told me that it was a rare operation. I have never spoken to, or heard, any other women who have had it.

Maybe we could help each other, I thought.

Another related:

My itch started about twenty-six years ago when I was in my forties. I went to countless doctors who did not know what the problem was. Many creams were prescribed that neither relieved the itching nor promoted the healing.

And another:

I have waited twelve years to be able to speak to someone, who was of my own age group, (she was thirty-five) and has been in the same situation.

Yet another:

Progress was steady, due to the very positive support from my gyn, family, and friends. I fortunately recovered from the ordeal with an excellent outlook. The only side effects are repeated urinary tract infections and thrush.Some of their stories had striking similarities. Many talked about an itch that doctors were unable to treat successfully. It was evident that there was a need for women to be able to come together and share their experience. Sharing is healing, I discovered.

I had told my doctor for years that I had a particular itchy spot. His answer was, "all women have an itchy spot". That itchy spot turned out to be cancer! And every woman I talked to said that they did not know that you could get cancer "there".

It seemed as though this was a cancer we were supposed to be ashamed of. But we cannot afford to be quiet any longer. Too many women are being diagnosed too late because they have never been informed of what to look for. Women are so busy examining their breasts that they never think to look between their legs. The deafening silence on VC must be broken now!

I wish I could tell of the hell I went through with three more vulvectomies, and the removal of my vagina, cervix, ovaries, uterus, clitoris, urethra, and bladder. I was hospitalized a total of seven times before I finally got an "all clear". I went to countless doctors who did not know what the problem was with my vulva. And after my vulvectomy, I felt essentially sexless, yet I yearned to feel womanly.

Gynaecological Awareness Information Network (GAIN)

My experience made me see a definite need to educate women, to make them aware that there is a procedure for self-examination of the vulva. Lumps cannot be ignored, nor can itches that just don't go away. Where are the articles and pamphlets on gynaecological cancers? Why don't we hear about them? Some women don't even know where, or what the vulva is! Until women become interested in their own sexual health and are comfortable talking about their anatomy and disease, the silence will continue.

In response to the needs of these women, I created a support group called GAIN, or the Gynaecological Awareness Information Network. It is my hope that GAIN becomes a network that brings practitioners, health service organisations and patients together in a spirit of cooperation to ensure that all available resources are fully utilised by those in need. Further, GAIN seeks to assist women in finding the information they need to make the 'right' health choices; to provide support as they face new challenges; to enable healthcare professionals to become more responsive to the needs of these women; and to provide community education to promote awareness of gynaecological diseases in the hope of early detection and proper diagnosis.

What I have learned

I have learned that having cancer does not always mean that we die. However, I am mindful that it could recur. Having survived the emotional and physical impact of VC, my life goes on. My story needs to be shared in order to help other women. For me, it has become a positive experience - an opportunity for personal growth and development. This is why I encourage other women to come forth and share their stories so that they, too, can grow and develop. Sharing IS healing.

May 2000